Grassroots Advocacy for Hard of Hearing People

One of a Series of Articles on the Awakening Oral Hearing Loss Community

This article discusses one of the workshops I attended at the California SHHH convention in Buena Park on February 19. The presenter was Grace Tiessen, who has been an advocacy dynamo in southern California for many years.

Grace began her presentation by noting that pretty much everything we do or DON’T do publicly is advocacy. When we ask for an assistive listening device (ALD) at the movies, we are actively advocating for theaters to provide well-maintained and effective ALDs for people with hearing loss; when we don’t ask for an ALD, we are advocating for them to NOT provide ALDs.

Grace listed the basics of advocacy, a series of steps that anyone considering advocacy would do well to learn and follow. Her steps are:

1. Understand the problem. It’s important to really understand what the problem is, not just what some of the symptoms are or what part of the problem is. And it’s really good if you can consider the problem from the viewpoint of all interested parties.

2. Think about possible solutions. Be as creative as possible. This is a good place to do brainstorming. Get a bunch of people together and have them throw out whatever ideas come to mind, regardless of how “impractical” they may seem at first.

3. Are there any precedents? Does the ADA address this, or Section 508 of the Disabilities Act, or Section 504 of the Rehabilitation Act? How about an applicable state law? Has someone in another city already achieved what you’re trying to accomplish in your city?

4. Who should you speak to? The person you talk to is at least as important as what you say. Be sure the person you’re talking to has the authority to make the change you’re requesting, or at least knows who in the organization to talk to about it.

5. Be persistent, polite, and firm. Many people just give up when their initial request goes unanswered or is brushed off. In fact, that’s what most people do, and it just encourages organizations to ignore requests for change. Once you’ve made contact, don’t give up until you’ve achieved your goal! And do be polite. Yelling and screaming is rarely the most productive way to approach negotiations.

6. Praise and give thanks for good features. Don’t forget to praise those who are making an effort to accommodate hearing loss, whether you’ve advocated with them or not.

Grace’s advocacy focuses on providing captioning in a variety of situations. She believes that all educational/medical/informational videos should be captioned, that people with hearing loss should have access to first-run movies at their convenience, and that all live theater should provide at least one captioned performance. She believes that captions should be routinely provided, like wheelchair ramps and PA systems are today.

Grace talked about the situation with Kaiser Permanente HMO, which was sued for communications access by Disability Rights Advocates in 2000. Kaiser agreed to make their programs/facilities accessible. But Grace noted that there has been little progress for hard of hearing (HOH) people. Some videos are captioned, but the captioning is not routinely turned on; no captioning is generally provided at the many health classes that hearing people find so useful. Despite the fact that Kaiser Permanente has about 600,000 patients with hearing loss, they seem uninterested in ensuring that these folks have full access to communications during their medical appointments.

An audience member pointed out that Kaiser is not unique in ignoring accessibility for people with hearing loss. At the House Ear Clinic, which exists to serve people with hearing loss, the nurse still summons people to their appointments by walking to the door of the waiting room and calling their names! Surely they could install a display on which to put a person’s name when it was time for their appointment!

Grace explained that the issue is really larger than whether captions are displayed on all their videos all the time. And it’s larger than Kaiser Permanente. (She uses them as an example, because she is a patient there and knows their program the best.) The real issue is that the medical profession is not interested in hearing health. Again using Kaiser as an example, new members do not have their hearing checked; a hearing screening is not included as part of an annual physical; the Kaiser Healthwise Handbook contains nothing about hearing loss. Grace believes that a person’s hearing status should be part of his medical record, just like blood pressure and cholesterol!

Another common situation that Grace discusses is the perception on the part of the service providers that she is the only person with hearing loss. When she advocates for a hearing loss accommodation, the response is all too often an accommodation for her for that particular situation. While that’s a helpful response, it’s really not her goal. When Grace advocates for an accommodation, she would like to see that accommodation become part of the infrastructure, available to anyone who needs it at any time.

Grace also discussed her recent advocacy to get the Dalai Lama’s presentation captioned. He recently presented a three-day program at the Pasadena Civic Auditorium. The director of the Auditorium remarked that in his 14 years as director, no one else had ever requested captioning! But they did provide it for Grace. They placed her in a two-seat section of the front row with a small monitor in front of her. Another person with hearing loss arranged to trade places with the person next to Grace. And two others sat on the floor so they could follow the program through captioning. So the solution provided access for four people. But surely some of the other 3000 people in attendance would have benefited from a more universally accessible solution.

Another interesting aspect of that presentation was that it was translated into several different languages, which were transmitted throughout the auditorium using assistive listening devices. Someone who preferred to hear the presentation in French, for example, checked out an ALD that operated on the frequency that contained the French translation. Similarly for other languages. The only major language that was not accommodated was English! How many people could have benefited from an ALD with the program transmitted in English? The bottom line here is that “HOH” is just one more language to be “translated”.

She is also advocating for at least one captioned performance of every play at the Pasadena Playhouse and the Mark Taper Theater. This is currently being done at some theaters in New York, and Grace thinks these two local theaters will soon provide this accommodation.

Grace next made a point of ensuring that people know what it means for an organization to provide access to HOH people. She believes that providing access requires the use of technology. Access includes FM or infrared ALDs, induction loops, captioning, amplified or captioned telephones, email, etc. Examples of things which are NOT access include buttons that state “Face me, I read lips”, talking louder, asking the HOH person to sit in the front row, and providing sign language interpreters.